The Ministry of Health and Family Welfare (MOHFW) has announced the inclusion of Primary Hyperoxaluria, specifically for transplants, under the National Policy for Rare Diseases (NPRD) 2021. This decision follows a review conducted by the Central Technical Committee for Rare Diseases (CTCRD) under the Directorate General of Health Services (DGHS) based on the latest scientific data.
Primary hyperoxaluria (PH) is a group of rare genetic metabolic disorders that are characterized by the accumulation of a substance known as oxalate in the kidneys and other organ systems of the body. Affected individuals lack functional levels of a specific enzyme that normally prevents the accumulation of oxalate. This leads to formation of recurrent kidney stones and can cause chronic kidney disease, which can ultimately progress to kidney failure.
Primary Hyperoxaluria has been categorized under Group 1 of the NPRD, 2021, which comprises disorders that are amenable to one-time curative treatment. This inclusion is in line with Paragraphs 6.2 and 6.3 of the NPRD, 2021, which outline the criteria for identifying and categorizing rare diseases based on expert clinical experience.
The addition of Primary Hyperoxaluria to the list of rare diseases under Group 1 is a step towards ensuring that patients suffering from this condition receive the necessary financial assistance for treatment. As per the provisions of the NPRD, 2021, patients diagnosed with Primary Hyperoxaluria and requiring transplants will now be eligible for financial aid, which will be provided in accordance with the guidelines and procedures issued to all Centres of Excellence (CoEs) through the Ministry’s letter dated August 11, 2022.
The NPRD, 2021, aims to provide a comprehensive framework for the prevention, diagnosis, and management of rare diseases in India, with a focus on enhancing access to affordable treatment and ensuring that patients receive timely and appropriate care.
